Team Bella: update
Pre-B, ALL Relapse, Post-induction, Day 60:
Bella completed the 2nd intense cycle since relapse on Friday! Woot! Woot!
She is neutropenic but has had a Hb transfusion yesterday, followed by platelet transfusion today. Counts this morning: neutrophils 0, Hb= 93, WCC 0.3 platelets <10. See? I had to request platelet transfusion because no one had followed it up! I need to stay on top of her counts daily to help advocate on her behalf. 😔
I requested day leave from Kookaburra ward (because I knew that RCH would not discharge her due to her being on the TPN atm).
So we were allowed to take her out for the afternoon (~2.5hr to be exact).
It makes a HUGE difference for a patient. Bella had been stuck on Kookaburra for 27 days. 😔 Long term patients become clinically withdrawn/depressed. As a parent, this is heart-breaking.
I would often encourage her to leave her room. Walk around the ward. Play in the hut. But Bella becomes so withdrawn because the chemo (which makes you feel lethargic & crappy in addition to the pancreatitis ) that she prefers to coup herself up in her room. She also experiences sensitivity to noise & light so her hospital room is her HAVEN.
I don’t want her accept that this journey is normal. I don’t want her to feel like being bedridden is normal. I don’t want her to stop socialising with people because she thinks it’s normal. It isn’t.
So today with some prior organisation, we managed to get a couple hours day leave. It was SUBLIME. To drag her out from the withdrawal & clinical depression that she so easily falls into during intense treatment.
Team Bella: Freedom from the IV pole. Not giving in to this INSIDIOUS DISEASE. 💪💪👊👊Fresh air ❤Williamstown❤ Pelicans Landing ❤